Changing perceptions of palliative care in liver diseaseCathy Carroll

Palliative care clinical nurse specialist for liver services

Royal Free Hospital

catherine.carroll1@nhs.net

• Deaths from liver disease continues to rise (400% rise since 1970)

• These patients access hospital services frequently in the last year of

life and 70% of deaths from liver disease occur in hospital

• Patients experience a high symptom burden

• 90% of liver related deaths are under 70 years old

• But referral to palliative care is often late or absent!

Background

Background – increasing prevalence of liver disease

NHS Atlas of Variation in Health Care for People with Liver Disease, 2013

“Deaths from liver disease”

National end of life care intelligence network 2012

• Recognition of dying – uncertain trajectory of disease

• Disease course results in episodes of rapid deterioration

• Social economic – prevalent in more deprived areas

• Challenges relating to the patient group and barriers to accessing

care; age, social support, homelessness

• Varied palliative care resources cross the UK – not always familiar

with caring for patients with liver disease

Potential barriers to accessing palliative care

Potential barriers – recognition of dying

Addressing the need at the RFH

Quality improvement

work

Holistic care MDT

CNS visibility at ward level

Education and

Research

Use of tools to address

identification

Case Study – Mary

40 year old woman

ARLD (conflicting alcohol history)

Previous SBP, previous TIPS, recurrent admissions in last 6 months

Admitted with: UGIB, HE and possible Alc hep, Child pugh C, Frail

and cachexic

DNAR, ward based care, OGD and “active management”

Challenge – Identifying palliative care needs?

Hudson BE, Ameneshoa K, Gopfert A, et al. Frontline Gastroenterology

Published Online First: 21/12/2017 doi:10.1136/flgastro-2016-100734.

http://www.spict.org.uk/the-spict/

Mary Case Study

Mary

MDT

Uncertainty “heard this all

before"

Stigma of liver disease?

Complex symptom control

Psychological support –significant

trauma

Children and complex family

dynamics

Financial support

Bereavement risk for family

Uncertainty –treatment escalation/

QOL?

• Provides specialist advice for liver team, palliative care and

community teams

Palliative care CNS input

Specialist

palliative

care

Specialist

Liver

care

• Parallel planning – Navigating uncertainty with patients

• Symptom control – liver specific knowledge

• Carer support – including bereavement support

• Holistic assessment of patients needs

Treatment of disease with

Hepatologists

Pallia

tive c

are

Parallel planning

No further

reversibility of

disease trajectory

considered.

Palliative care input in

last days of life.

Palliative care, parallel planning

Recognition

of life limiting

disease with

uncertain

trajectory

Collaborative working between

palliative care and liver teams to

achieve patient goals of care

• Physical: Pain – Abdominal, usually on MST

• Psychological: coming to terms with uncertain prognosis, previous

trauma linked to alcohol use

• Social: lives between Wales and London? Homeless?

• Family: Has a son (12) limited access, fractured relationship with ex

partner, mum and sisters in Wales. Mary’s son is very important to her

and she wishes to spend quality time with him.

• Spiritual: Catholic faith, not practicing but important to her mum

• Information: weighing up quality of life vs quantity, hospice vs

hospital

Mary Case Study

• Challenging services to ask:

• “What is palliative care?” “When is it offered?” “Who gets palliative

care?”

A new role – pushing boundaries

“Too young: they aren’t palliative

yet” “We’re not their yet”

“It’s a bit early”

“Patient wants to

return to hospital -

No advanced care

plan needs”

“No palliative care needs”

“Social issues not palliative

care issues”

Uncertainty – patients “don’t fit”

regular service provisions

Limited charitable support

compared to other diseases e.g.

cancer

• Preferred place of care and death is hospice

• Mary opts to go to the hospice for QOL vs staying in hospital

• Transferred to local hospice where she spends time with her family.

• Dies within 2 weeks of hospice admission

• Family receive ongoing bereavement support from hospice service

Case Study Outcomes, Mary

Impact on palliative care referrals in RFH

Feedback

“This is the first ward I have ever worked on

with a dedicated palliative clinical nurse

specialist, and it has made such a positive

difference. Hepatology is unfortunately a field

with a considerably high morbidity and

mortality, and it really helps having the

palliative team pick these patients up early on

to help manage their symptoms both as

inpatients and as outpatients in the

community.” Junior Clinical fellow

“I wished we could measure this – I thought

that the person that was dying was receiving

amazing care. I really believe that this is due

to all your hard work.” Macmillan CNS

Community Palliative Care Team

“You babysat me throughout

my dad’s death, I will never

forget you. I believe having you

there things are easier for me

now my dad has passed than

they would have been without

you.” Relative

• Atlas of variation for palliative care and end of life care in England, October 2018

• Peng, JK et al (2019) Symptom prevalence and quality of life of patients with end stage liver disease: a systematic review and meta analysis. Palliative

medicine 33 (1) 24-36

• https://publichealthmatters.blog.gov.uk/2014/09/29/liver-disease-a-preventable-killer-of-young-adults/

• Office of national statistics 2019:

https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/bulletins/deathsregistrationsummarytables/2018#leading-

causes-of-death

• Williams R, Aspinall R, Bellis M, et al. Addressing liver disease in the UK: a blueprint for attaining excellence in health care and reducing premature

mortality from lifestyle issues of excess consumption of alcohol, obesity, and viral hepatitis. Lancet 2014;384:1953–97.

• Poonja Z, Brisebois A, van Zanten SV, Tandon P, Meeberg G, Karvellas CJ. Patients with cirrhosis and denied liver transplants rarely receive

adequate palliative care or appropriate management. Clin Gastroenterol Hepatol 2014; 12(4): 692-8.

References and further reading

Thank you and Questions?

“You matter because you are you, and you matter to the end of

your life. We will do all we can not only to help you die

peacefully, but also to live until you die” - Cicely Saunders